How often do you ever hear anyone talking about men who suffer from ME/CFS? The answer is not often enough. As a matter of fact, when most of us think of Chronic Fatigue Syndrome we think of a woman since the disease is more prevalent in us. ME/CFS affects four times as many women as men. The CDC estimates that approximately 200,000 men are suffering daily with ME/CFS.
I don’t want this to sound sexist, but I think it would be harder for a man to have ME/CFS because of the society’s concepts on what a “man” should be. According to stereotypes and society, a man is supposed to be strong, head of the household, a leader and protector. While women are leading many of the same roles as men these days, it is still expected more for a man to bring in the most income and they usually thrive with that responsibility. But for men with ME/CFS, their jobs are usually the first thing to go once they become ill. Here is what Gulf War veteran, Matt Matherne, had to say after becoming ill and losing his job:
There’s a sense of feeling worthless because you feel like you’ve let your wife and family down. If I didn’t have CFS I would probably still be in the military, supporting my country and my family.”
Don Sprayberry, a 56-year-old married man had this to say about losing his job from ME/CFS:
I think the most difficult thing for a man is not being able to earn a living. You feel you aren’t taking care of your family like you should.”
Because men do typically earn more than their wives, the financial strain can be extreme and there is more pressure put on the spouse to try and figure out a way to make up the difference in income, which can be nearly impossible.
Men also feel extra stress because of the burden that is put on their wives and children. The man will feel guilty because he is unable to do things around the house like he once did, is unable to help with the children, and the wife is stretched very thin. Matherne says:
All the things my wife depended on me to do are mostly no longer possible. It eats away at me. I did so much more for my wife before I was sick. Now the burden is on her.”
ME/CFS patient, Patrick Venetucci, says his role as a father has changed:
I have two small children. Right now, I can play with them lying down and they don’t realize any difference. But I have to refrain from going to birthday parties and social outings with them to preserve my energy. I worry very much about the future and all the things I won’t be able to participate in.”
The identity struggles are also abundant among men with ME/CFS as they are with women. I wish I had a dollar for every time I heard someone with ME/CFS say that they don’t know who they are any longer without their jobs, without their social standing, without their normal everyday “things” that have made them who they are over the years.
Men also deal with the social stigmas and prejudices of not looking sick or not looking sick enough to not be able to work, to be on disability, etc. Men feel enormous pressure to try and carry on and act as though everything is fine when in fact they are extremely ill. Sprayberry says:
I’m sixfeet-four-inches tall and weigh 230 pounds. Some people look at me and think I can’t be that ill because I look so strong.”
Stay tuned for Part 2 where I will cover where ME/CFS men can find help.
Excellent information. My husband suffers from debilitating back pain once or twice a year for a week to two weeks. I cannot imagine how he would handle ongoing chronic pain like that (as I have on a daily basis for years). He’s also been unemployed for months at a time (he’s an IT consultant and work is not steady) and has had to battle depression on a couple of occasions when he wasn’t working. The last time he was out of work for several months, he started indulging his woodworking hobby and made some money at it. I think men are heavily invested in what they do to define who they are. If there’s nothing to do as a result of unemployment for whatever reason (and chronic pain certaily is one) then often they have to guard against depression and seek treatment if it happens.
Great article. Glad to hear someone who cares speaking up for people suffering from what I have. I want you to know that married men with families are not the only ones who have CFS. I for one, am a 28 year old guy whose symptoms started at 13, and being disabled and jobless for 15 years makes me feel that same sense of worthlessness these family men expressed. Not only that, but feel I can never be in a relationship because I can’t support another person, and have to live in my parents’ house. The responsibility of men is something that indeed makes having chronic illness twice as bad, and I thank you for bringing that to light.